Blue-Eyed Breather

Today I was at church with my parents. After the baby dedication, the pastor prayed over the families. It was a fine prayer until he said something along the lines of "raising kids in a Christian home is the best way to ensure kids grow up healthy". This is when I opened my eyes and tuned out the rest of the prayer. Honestly, this is where I tuned out the rest of the service. This false narrative is exactly why American Christianity can be so out of touch with the world. No. No. No. This is not how God works. Yes, in a world without struggle and pain and heartache, I wouldn't have cystic fibrosis. But in our current, broken world God uses illness and weakness to prove His strength and power and love. If God wanted to heal me, I have full confidence that He could and that He would. I know there are people who have experienced divine healing. But in many cases, God uses our weaknesses rather than spontaneously healing us. In 2 Corinthians 12, Paul says, "But He (t...

Dear friends and family,  Happy 2017! I hope this letter finds you in good health and that you all are doing well. Since my last letter, I’ve had a bit of a crazy year. I have continued making my way through grad school, working in a variety of settings with a variety of clients. I have loved grad school and am so excited to become a speech-language pathologist! I know this is exactly where God has placed me. In May (right before the CF walk), I will graduate Summa Cum Laude from the University of Texas at Dallas with my master’s degree and will officially enter the working world. It’s a little terrifying because I’ve been in school for so long, but I’m excited to see what lies ahead. As well, I have another bit of wonderful news—I’m engaged!! Eric (my fiancé) is amazing and so supportive. He is not scared off by my CF, and he is so willing to learn everything he can about my health. We are getting married in July, and we are so thrilled! My health has been a bit rocky thi...

I was always told I could do anything. That CF couldn't stop me. That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal". I'm finding out now that's not necessarily the case. Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pat...

If you're going to read this post, please promise me this: you will read it all the way through AND you will try to read it from my perspective. Deal? Okay, let's proceed. I haven't kept very quiet on social media about my opinions on the healthcare debate. However, you can only write so much on a short Facebook post or tweet. I am going to flesh out my ideas on healthcare and present to you exactly why I believe what I believe. 1. If you have read any of my blogs in the past, you know I have cystic fibrosis, a genetic, progressive, life-threatening disease. My healthcare costs are undeniably massive. My family maxes out on our out of pocket deductible within the first month or two of the year, depending on what is going on in my life. Obviously, my family has to have the best coverage possible so that I can get the medicines I desperately need. Before the ACA (when I was growing up), people would ask me what I wanted to be when I grew up. Often, I didn't know the a...

As you all know, I love to read. Here are the books I read in 2016! Let me know if you have any favorites I should read in 2017 :). Thinking in Pictures by Temple Grandin The Journal of Best Practices by David Finch The Brain that Changes Itself by Dr. Norman Doidge The Diving Bell and the Butterfly by Jean-Dominique Bauby Among the hidden by Margaret Peterson Haddix Among the impostors by Margaret Peterson Haddix Still Alice by Lisa Genova Schuyler's Monster by Robert Rummel-Hudson Why not me by Mindy Kaling The Jungle Book by Rudyard Kipling A Midsummer Night's Dream by William Shakespeare 5 love languages by Gary Chapman Fahrenheit 451 by Rat Bradbury The BFG by Roald Dahl Unbroken by Laura Hillenbrand 41-A portrait of my father by George W Bush The Meaning of Marriage by Tim Keller The Secret Garden by Francis Hodgson Burnett Pollyanna by Eleanor H. Porter Life from a CF Cornerman by Raymond Poole The Magnolia Story by Chip and Joanna Gaines

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes! Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because C...

As most of you know, for the past 7 months, I have been participating in a Vertex clinical trial testing a drug called VX-661 in combination with Ivacaftor. On Monday, Vertex released a statement saying they are stopping the trial for people with one copy of deltaF508 mutation and one copy of another minimal CFTR function mutation (what they refer to as "het-min" mutation combination). Meaning my part in this study is finished. The results thus far showed that the drug was not providing meaningful benefit and therefore was not worth the time, effort, and money to continue studying. This drug combination is still being studied in other mutation combinations and is thought to be more promising. When I heard the news on Monday, I was filled with mixed emotions. For starters, I so desperately want there to be a cure for CF, and we're so close I can almost taste it! Yet we're not there yet, and my patience is growing thin waiting. Also, I've seen so many great succes...